@bigbob5461
When I was first diagnosed, medical people used the word “benign” when they talked to me about MGUS. It was not benign to me in that it could potentially change the trajectory of my life. But looking around and seeing what other health issues others are dealing with puts it in perspective for me. It’s not cancer and I will most likely die of something else if I am not an overachiever (which I do not intend to be).
1. Possible symptoms include annoying peripheral neuropathy in my feet. It is some bad, but it is Irritating. It’s sometimes makes it hard for me to sleep. It also makes me a little wobbly. So a career as world class gymnast is probably off the table. Not to make light of it because it has slowed me down, but I am still very active and try to stay fit.
2. I would like to see a neurologist, and I have been trying to break into that tight little medical clique for over a year. I’d like to get their opinion about possible remedies for the neuropathy. Every six months, I see an oncologist/hematologist for the MGUS.
3. I try to look at the glass half full rather than the glass being half empty. Instead of facing chemotherapy or some other very invasive treatment, I may not have to treat anything as it is unlikely for my MGUS To progress. We are all different so of course one can’t say with absolute certainty, but the statistical risk of progression is 1 to 2% per year.
Having to deal with this at all is not only disappointing, but it can be depressing. I think it’s important for us to utilize our support systems. Talk to trusted friends, get therapy, join a support group, chat with the good people here on this forum.
4. I probably did think about it on a daily basis when I was so newly diagnosed. Nobody ever calms down because somebody tells you to calm down, but I hope that you will trust me when I say that it does get better. It becomes the new normal and something that you probably won’t think about much at all, unless it’s time to go see the doctor again. Then I think about it. But every time I have gone, my numbers are very much the same. Sometimes there’s a little bump here or there but then the next time they go down again. I try to stay in real time and live each day well without cluttering it up with fear and anxiety.
5. Before my retirement I was a medical social worker. I felt then and I feel now that it is such a privilege to talk to people about their fears, but also to be happy with them when things go well.
6. Yes by all means, live your life! Do the things you want to do. Maybe this is a good time to do those things that bring you joy. Spend time with people who make you joyful.
7. Being worried about damage to other organs is a relatable concern. I don’t mean to be Pollyanna here, but when you think about it, you’re going to get excellent preventative medical care because of the MGUS. You’re going to get frequent blood draws and bone scans, perhaps even bone biopsy to look at your bone marrow. They’ll monitor your kidney function and your liver function and look for lesions on your bones. Otherwise you might never even know you are ill, because so much of it would be symptom-free initially. so if something does happen, whether it has anything to do with multiple myeloma or not, there can be early intervention. Who gets that kind of routine preventative healthcare?
8. One of these days maybe they’ll figure it out and there will be a way to treat MGUS. I certainly hope so. Until then we have to do those things that we know contribute to healthy lifestyle such as diet, exercise, and some of our members are having some success with turmeric…curcumin supplements. There are also some studies that are being conducted on plant-based diets. Feel free to jump in on some of those discussions.
Bob, do you mind sharing a little more about your diagnosis. How did they discover the paraprotein and do you see a hematologist/oncologist?